Category: Disability

This one is especially for my fellow QDN members. Those of you who were at the recent meeting at North Lakes with Federal Member for Petrie Luke Howarth and the Federal Assistant Minister for Social Services and Disability Services Jane Prentice may recall during question time, someone asked about the Cashless Debit Card.

The Cashless Debit Card (CDC) for those of you who haven’t heard about it yet, is the government’s latest scheme in Income Management of people who receive Centrelink payments. All payments aside from Aged Pension and Veteran’s pensions are triggers for a person to be placed on the card.

Once on the card, 80% of your payment is put onto it and the other 20% into your usual bank account. The 80% on the card is restricted to how you can spend it. The card cannot be used for cash withdrawals or transfers between accounts. It cannot be used for direct debit payments unless by agreement with Indue (the company managing the card scheme). It cannot be used to purchase alcohol or gambling items (except for lottery tickets). This means you can’t use it if you go to the club with friends for a drink. You have to rely on the cash you have in your regular bank.

Currently the card has been trialled in Ceduna South Australia and East Kimberley in Western Australia. The third trial site was announced this week as being the Goldfields region of Western Australia. The government and stakeholders in the scheme have expressed every intent to expand this nationally.

We raised our concerns about people on DSP and Carer payments being placed on the card with Mr Howarth who told us we had no reason to be concerned as it was not aimed at people like us. It was apparently aimed at people of working age on Newstart or Youth Allowance. However legislation and guidelines to the scheme specifically state as I mentioned above. ALL payments except for Aged and Veteran’s Pensions are trigger payments for a person to be placed on the card. When I found this information I then went and emailed Mr Howarth as he had invited me to do. His office told me he’d have to do some research and get back to me.

He still hasn’t gotten back to me. Now that the final evaluation of the scheme has been released and the government are blowing their own trumpets about how successful it was (that’s another story) and it’s very clear that they have every intention to continue to expand it, I wanted to make sure you are all armed with the information you need to know. This will be an election issue for us come the Federal election.

The review of the trial showed the numbers of people who responded to the surveys (you can read more about the evaluation and other articles I’ve written about this via the links below). I don’t know why Orima relied on people self reporting what payment they were on when they could have obtained that information from the Department of Human Services but if you do read my other articles you will see the entire review is flawed with inaccurate reporting and figures.

It is important though to note that there ARE IN FACT people on DSP and Carer payments who have been forced onto this card scheme.

In fact almost half as many people as Newstart participants are DSP participants. There are 2141 participants all up but only 552 people were surveyed. Many have refused to state the payment they receive in the survey.

I have a whole range of concerns and issues about income management as a citizen but as a person with a disability it is even more significant. The difficulty I will have in changing my payment methods of my bills (I share expenses with other people) will be stressful. Not being able to transfer money to my kids or family or pay the small bills I pay by bank transfer will restrict me. Most of all, for myself as a user of mobility devices and a person with motor control issues, I struggle to insert my card into eftpos machines. The CDC has no tap and go feature which is the method I mostly use when using my card while shopping.

I am exploring if this means that the card discriminates against me on the basis of my disability. I also have a number of privacy concerns.

What we were mostly concerned about at the meeting though is why we should even have to be put onto such a demeaning scheme when on the flip side the government are telling us not to accept this kind of demeaning treatment and that NDIS will set us free. Why is it that we can be in control of thousands of dollars in NDIS funds but not our own income support?

If this card is supposed to be aimed at reducing crime, alcohol, drug and gambling problems then why are we being put on it? What are they trying to say?

If you want to find out more about it please feel free to read my other articles or get in touch with me to ask any questions. Most of all, we all need to ask our Federal representatives if they really understand what this is all about and what it will mean for us. And them come the election.

I’d like to believe Mr Howarth wasn’t lying to us and that he was just ignorant of the facts. That said if he was only ignorant and just going by the media releases the government have been putting out to make it sound good, then is he really doing his best to represent us?

When you decide to put yourself out there as an activist for almost any cause you need to prepare yourself for the fact that you will have an opposition. Even when the cause is one as diplomatic as equality for people with disabilities. You need to develop a thick skin and the ability to ignore being used as a political football.

Yes, sad as it is, the reality is people with disabilities are a political issue in today’s society. Yes, we still have to fight for the equality and basic human rights that many take for granted. If you’re going to be a successful activist you will have to talk to people you may not necessarily like. You have to put your personal feelings aside and assert yourself in circles that wouldn’t necessarily welcome you under normal circumstances. And you have to try to do it with dignity. It’s not an easy task.

You also may find yourself having your photo taken with the odd politician here and there. That’s what I do. I call it the penance I pay for being granted the wishes I ask for. Even if those wishes aren’t personally for me.

What I didn’t expect was that my having my photo as an activist and advocate for others with disabilities, would ever be used against me in a way that was admonishing of me and my character.

I haven’t been all that active online of late. Not compared to the past. So imagine my shock when I was sent screenshots of a particular political candidate and their members openly criticising my character because I’ve had my photo taken with another politician. Of course it’s pretty simple history behind it. The photo in question was with their opponent.

So just in the interest of fairness, honesty and transparency, I thought I’d share a gallery of all the photos I’ve had taken with other people who might be considered of a political nature. I mean after all, selfies are the new autograph right?

This is apparently the photo that started it all. It’s the only one I have of me with MP Shane King and Minister Steven Miles. It was a photo shoot for media. I was invited to be in the photo because of the work I’d done on the project for which the funding was announced. It’s not uncommon for community activists to be involved in media for these things but apparently, shame on me.

Me with some other Moreton Bay community members including fellow community advocate Belinda Norrie who I’ve had the pleasure of working on a number of projects with, talking to MP Bill Byrne. This is a little event that is known as a community cabinet. Many people go there to discuss issues about their community with various Ministers. We call this taking opportunity to get shit done.

Me with my all time favourite disability activist and inspiration, Carly Findlay Morrow. This chick raises me up so I can keep having inappropriate photos taken with inappropriate people.

Me and Rusty Young. I bought his book so I could get a photo with him. I have a bit of a celebrity crush on him.

Me with some others from the Parkinson’s community with none other than LNP MP Ann Sudmalis

Another year another group of 612 ABC Community Correspondents. They’re a damn awesome bunch of people.

Here’s me and my cat Princess again having a serious discussion about how to get this life people keep telling me to get.

This is one of my favourites. It’s me with Disability Discrimination Commissioner Alastair McEwen.

Here’s a photo with me and holy crap is that??? No…. it isn’t… wait, yes! It’s Former LNP member Reg Gulley and Former Premier Campbell Newman!

Me with the 612 ABC Community Correspondents

Here’s me with a Meerkat. Of all the politicians I’ve met this guy was the most admirable.

Here’s a photo of me with my cat Princess. She’s very political. No one knows me like she does. She’s even saved my life a few times.

Me with Mayor of Moreton Bay, Allan Sutherland. Cos when there’s a mayor wearing a top hat you just have to get a photo

Ok not in this photo, cos I was taking it, but it’s me with the Premier of Queensland, Annastacia Palaszczuk

Here’s me with Patrick Williams from the ABC. Like most people who get their photo taken with me we met on Twitter before we met in person here.

Okay so I’m not in this photo because I volunteered to take it. You’ll notice there are a few political types here but my favourite moment of this photo was meeting former Governor General Quentin Bryce. She is a real lady.

This is me with Bernadette (Bernie) Young. We met when she was working at 612 ABC Brisbane and I joined the Community Correspondent program. We caught a show at Qld Ballet.

Here’s me with former MP Dave Gibson. He’s a great bloke with excellent knowledge of disability issues.

Just one more time cos hey, if you’re going to criticise me for being in a photo for a purpose, it really should be this one…..

Here’s a photo with me and holy crap is that??? No…. it isn’t… wait, yes! It’s Former LNP member Reg Gulley and Former Premier Campbell Newman!

I’m sure there are probably plenty of other photos out there. Considering these days I can barely remember what my original hair colour was I reckon this isn’t too bad a collection.

It’s probably not a great idea to rubbish a community activist even if you don’t think they’ll see it. Chances are someone will. As an activist it’s my job to hold politicians accountable for the promises they make and how they treat the people I have promised to defend and advocate for. If you can’t work with me when you’re a candidate it could make things rather difficult to work with my community if you become the person who is supposed to represent them.

Of course I can’t leave a good story untold. There is one photo missing. This one

This is the photo that was supposed to happen the same day I was photographed with Campbell Newman. I’d been advocating for the increase of fines in disability parking by Police (at the time it was a $44 fine and it was increased to $228 which now increases annually) and had support of my MP at the time Reg Gulley.

I asked Reg if we could get a photo with Scott Emerson so I could add it to my campaign page to thank them both for their support. Reg was of course agreeable as he always is and told me he’d go get Mr Emerson for a photo. There was a whole bunch of MPs and other types milling around. Reg spoke to Scott who was with a group of others. He returned to me to say we’d grab him when he was finished with the person he was talking to. Next thing I knew, Reg ‘had to quickly talk to someone’ and along came Tracy Davis. She grabbed my attention talking to me like I was a long lost friend putting her bag on a chair behind me so that I had to turn around to see her when she was talking to me. She then hugged me. I don’t think I’d ever been hugged by a politician before that day. It was most unusual. She kept me there talking to me like she was interested and shortly after Reg returned with great disappointment that unfortunately Scott Emerson couldn’t wait, he had to be somewhere else. Yeah, somewhere I wasn’t.

I played along but I wasn’t stupid. I knew exactly what happened. The classic distraction play. Scott Emerson didn’t want his photo taken with the likes of me. When you’re openly critical of government policy or member’s behaviour it doesn’t matter that you do give credit where it’s due. Which is a shame cos at the time it was Campbell Newman receiving my wrath not Emerson, yet at least Newman was able to do the decent thing and pose for a photo.

So the moral of the story…..

If I have my photo taken with someone that another person opposes I will be labelled the enemy regardless.

Also, if you won’t pose for a photo with me I’ll turn you into a stick figure.

25 years since the Disability Discrimination Act 1992, 6 years since Access to Premises (Building) Standards 2011 were implemented, you’d be forgiven for believing we’ve no reason in Australia for not being able to access infrastructure as significant in our community as public transport.

If I asked you, do you think your local train station is disability accessible, without checking, would you say yes?

Many are of the belief that most stations are disability accessible despite what is in fact an incredibly poor compliance rate among he 154 stations on the Queensland Rail Brisbane network.

For a train station to be accessibly compliant it must be independently wheelchair accessible to all platforms, have tactile ground surface indicators on platform edges and electronic timetables.

If a station has car parking or toilets those must also be disability accessible.

All stations built SINCE 2012 meet compliance which is probably why the numbers are as high as they are being that the Redcliffe Peninsula Line and Springfield lines did not begin until after the standards were implemented. Which when I tell you the numbers, makes it quite astounding to learn such little has been done over the past 5 years to improve station accessibility.

So I want you to think about the stations you use. If you had a disability would you be able to use them independently?

How many of the 154 stations do you think are fully compliant?

27

Yes just to confirm for you that is not a typo, 27 stations or 17.5% of the network is compliant.

This means people with disabilities either need assistance to access or cannot access at all, one hundred and twenty seven stations.

51 stations have no tactile edges. This is one of the easiest compliance issues to rectify.

75 stations have no independent wheelchair access, with 26 having no wheelchair access at all.

So why does compliance take so long? My personal opinion is bad management but it comes down to money.

So that large corporations and organisations weren’t disadvantaged (I know, ironic right!?) there was an inclusion in the legislation for them to apply for an exemption due to unjustifiable hardship (again I know, the many is not lost on me either).

The Australasian Railways Association continues to apply for exemptions for all rail services in Australia, regardless of the individual business’s financial capacity. Queensland Rail have comfortably hidden behind this for years and as stations continue to deteriorate so does the service.

Just recently we’ve seen a number of reports of disabled people being stranded on platforms & trains and all of these incidents have been preventable.

Ramp access from platforms to trains where the platform is lower than the train still remains assisted and somewhat dangerous. The ramps are portable and have no fixable point relying on staff to hold them in place.

Just when you think it can’t get any worse, we’re about to see the release of NGR (New Generation Rollingstock) trains that pose a list of access issues that Queensland Rail are still trying to rectify. So even if we manage to get onto a station platform, well, chances are we won’t be getting on that train anyway.

Look at us. 2017, still fighting to get access to public transport, still fighting for that accessible parking space and yet all some people want to know is why we don’t just get jobs.

Maybe Qld Rail could hire me to find the solutions to the access issues. Heaven knows, I’ve tried giving them some of the solutions for free but no one really seems to want to listen.

For ongoing coverage of the NGR issues I recommend following @InclusionMoves on twitter.

As for platforms…. well, I’m going to recommend this reading to several members of parliament. If access to trains is something that affects you, or someone you know, feel free to send this to your state member.

I always knew there’d come a day when I’d finally crack. Finally have enough of taking the high road when the view up here leaves a lot to be desired. It’s lonely on the high road sometimes.

Many of my fellow disability activists and advocates have written and spoken about ableism. We all cop it. We all see it happening around us. We all get frustrated by the inane conversation where we are told just get over it, it doesn’t mean anything. It does mean something to us.

When I established the No Permit No Park Campaign back in 2013 (wow time has flown), I had every intention of being the educator. I learned to change my passive aggressive language into something more engaging to try and open a conversation with the community about disability access and our rights to inclusion. For the most I was successful. I honestly expected to change the world. “If only they could see it from our perspective” I use to think.

I am damn proud of every success, every achievement we’ve had throughout the campaign and that I have had on a personal level through my various forms of engagement with the community. Whether it be on the radio, in social media, public speaking engagements, I always have someone, at least one person get in contact with me to say, I never realised… I didn’t understand it until…. I see things differently now. To me, to have a person realise their own ableism and that they want to change it is the most important reason I put myself out there.

From the start people warned me, you can’t please everyone. I’ve had my share of attacks. I’ve been stalked, confronted, abused, ridiculed, ostracised, assaulted and victimised. None of that, not one thing that has ever happened as a result of my activism when standing up for the rights of people with disabilities has ever been worse than the discrimination against me and against my friends with disabilities.

My friend Tracey and I were told to leave a store recently, because her wheelchair might damage the stock. It was one of those dodgy bargain stores that over fill the shelves with so much stock you can barely fit through to see anything let alone buy it. The owner verbally abused us even shoving the phone into Tracey’s face telling her to call the police when we pointed out what they had done was an offence under the disability discrimination act. Unfortunately the act doesn’t allow us the right to call the police. It’s an offence, but it’s not a crime. We just left. Angry and humiliated.

Sure we could have taken it to the anti discrimination tribunal but for all the stress and heartache of it what would the outcome be in the end? That owner would never treat us as customers even if they made physical changes to their store. Even though our money burns the same way. Besides, bargain stores around here, they’re a dime a dozen. Sometimes you even get it cheaper at KMart so it’s wasn’t a great loss. It was just the principle.

I’ve never been afraid to call out ableists who make vile attacks on social media toward people with disabilities. In the past I’ve tried to reason with people and explain if they looked at it from a different perspective they’d understand why we speak up about things like the abuse of disability accessible parking, but often I get nothing but abuse and self entitlement so I just cut and block. Generally they go away. They are usually so mindless that within a few minutes they’ve found someone else to annoy with their unrecognised privilege and misdirected vitriol. Once in a while though, the person doing the victimising insists that they’re the ones being victimised.

Making comments on social media, in public forums, is a dangerous thing. The thing about the internet – and I still don’t understand why people haven’t learned this yet – is that once you put it out there, it’s there forever. Cos even if you delete your abusive, hateful, discriminatory comments, I’ve already taken a screenshot of it. Not because I want to keep reminding myself of these people, but because they don’t have the right to just walk away and not apologise. So I make sure it stays there, somewhere, forever to remind them. So that if they ever find themselves in our position one day, they might eat their humble pie.

You don’t get to come into our forum, our space, try to muffle our voices, cause people hurt and humiliation and then just walk away like nothing happened. You don’t get to promote your self entitled attitude, your opinion of us, or your indispensible privilege in a platform we built to stand up to these things.

You don’t get to have a say in our lives. Our rights are not yours to give us. If seeing people with disabilities out in public makes you uncomfortable, then I suggest you stay home. We won’t be. We will be out there, seen and heard. There’s nothing you can do to stop us. Most of all whatever you do, don’t tell us not to be angry. We have every right to be.

Jessica Kiddle made this comment, didn’t like my response, blocked the page, deleted it, then reported my photo when I posted the screenshot on Facebook so Facebook removed it.Some of the comments and posts below were reported by me and Facebook told me they don’t go against their community standards.

Below are some more examples I’ve collected over time of the kinds of things people say to me (and some to others in our disability forums) online. Click on the pictures to make them larger.

This post is dedicated to all my fellow disability advocates out there but mostly to my friend and mentor, Carly Findlay Morrow xo

It seems to resurface in a cycle. The critics, the condemnation and just general apathetic hatred for me as a person and for what I do.

I am an advocate. I am an activist. I fight for what I believe in. I make no apologies for that.

I won’t deny that at time, a brief flicker of frustration passes through my mind telling me to quit and become the hermit you always wanted to be. Or witness protection whichever pays better. Just stop giving people the opportunity to tell you what they think of you.

Honestly though those flickers are quickly extinguished. I don’t really understand what it is that smothers them as they fizzle into the void of lost thoughts that leave my mind. Integrity? Ego? Mental Illness? It could be a combination of those. I just don’t really care what people think of me. I stopped caring when I realised that if my own mother was not going to accept me as I am then no one would so trying was futile. Just get on with it.

Steve Irwin is quoted as saying ‘Crocodiles are easy. They try to kill and eat you. People are harder. Sometimes they pretend to be your friend first.’ He was a wise man.

I don’t expect everyone to be my friend. I don’t expect everyone to like what I do either. I mean what in the world would a person without a disability have to value from my work in making sure we have equitable rights, access and inclusion of people with disabilities right? It’s not like they’ll ever be in my position… oh wait… yeah. Still I don’t expect everyone to jump on my bandwagon and come along for the ride. I’m happy to travel alone. I like my company.

What I do expect is common decency and respect for advocates who are working to make the world a better space to live in. That’s not a given though. There are still those who cannot fathom why you do what you do because they’ve got so much privilege they don’t know what to do with it. There are those who just seem to be envious of the attention you get even though it’s not necessarily attention you want but it’s the necessary evil of raising an issue that needs attention for something to be done about it. There are those who well, just don’t like me so they don’t want to even appear to like or support anything I do. Which is really the saddest of them all. I don’t like the government at times but I certainly appreciate the freedoms and benefits I’ve been afforded by our democratic country. If you want to cut off your nose to spite your face that’s fine for you. Just keep your nose in case you decide you need it again one day. No point giving it to me, I have no use for it and I really don’t regard it anyway.

I’ve seen it happen to a number of advocates. Watching others try to tear them down because they have different values. It’s hard sometimes to just sit back and mind my own business. Seeing people get harshly criticised for wanting to do the right thing, the hard thing, the better thing. Or just because they have a platform to express their view on an issue that affects them. They’re not doing any harm to anyone else, but still others want to take them down. Classic tall poppy syndrome. That poppy is getting more sun than me, it has to come down now and I will make it happen no matter what it costs me.

The cost might be as simple as me, a bystander looking at the person and saying wow, you just don’t get it do you precious? It could be the loss of a friendship. It could be the whole loss of a support network when they just can’t deal with your unwarranted behaviour. The loss of a job because your behaviour expanded into bullying and you’ve brought the organisation into disrepute. Or the death of the person you’ve relentlessly criticised because you couldn’t deal with them having an opinion different to yours or a lifestyle different to yours.

It’s been really hard to watch what some of my friends and fellow advocates deal with.

I won’t apologise for what I do though. I believe in what I’m doing. If I have to make a video or go to the media or post something on social media a thousand times for the issue to get addressed, for change to happen, then that’s what I’ll do. You don’t have to like it. You can always look away. Chances are I’m not doing it for your benefit anyway.

If it really makes you that uncomfortable that a person living with a disability can speak for themselves, stand up for themselves, or dare to demand equal access and treatment, the same opportunity that you take for granted, then the issue really isn’t mine is it? It’s yours.

If you can’t allow a person to express something from their perspective on an issue that affects them, then you have far more privilege than you deserve really don’t you?

To my fellow advocates out there, I want to share this quote with you that I love from a guy named Asher Roth.

Just do it. No apologies. Unless you feel you have something you need to apologise for. Otherwise, do what you believe in. I’ve got your back.

Invisible disabilities are disabilities that are not immediately apparent. For instance, some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contact lenses. A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all. Most people with RSI move in a ‘normal’ and inconspicuous way, and are even encouraged by the medical community to be as active as possible, including playing sports; yet those patients can have dramatic limitations in how much they can type, write or how long they can hold a phone or other objects in their hands. Non-blind people with the circadian rhythm disorder “non-24” are as a rule unemployable and there are no visible signs of that.

Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.[1]

I really dislike the term “Invisible” when referring to disability or illness. As real as it is, it feels like a farce for me to call my disabilities and illnesses invisible just because other people cannot identify the symptoms. The very real and disabling symptoms.

Just because you can’t see it, doesn’t mean it isn’t visible. I can see it. I can feel it. I am the one having my life interrupted by it. Yet so many people like me are treated like hypochondriacs, scammers and weirdos because we have assistive technologies, disability parking permits and are placed on welfare payments because pushing us not just to find work, but to be employable is detrimental to our ongoing health.

Even when I’m doing “well” I still have symptoms, they’re just not as obvious as when I’m not doing well. The worst part is, that when I am doing well I feel like I should enjoy it, or take advantage and live life a little more on the wild side, you know, like going to a doctor’s appointment on the train in the city all by myself.

I recently had a visit to the wizard (neurologist – you know how the scarecrow went to the wizard to ask him for a brain… yeah, that), and he felt we’d found a successful combination of medications so, next experiment was to increase the dose.

It was only a few days before I went from needing to be rolled over and helped out of bed to leaping over tall buildings in a single bound. Okay so I’m not quite leaping but when these things are successful it does make you experience a kind of superhero phenomenon. Anyone who has been treated with steroids for a respiratory illness or infection will totally understand what I mean.

My hands haven’t been this steady for almost 10 years. I have no tremor. None. Well until the medication wears off but that has been drastically reduced as well by the new medication regime, however there are still times when I’m late with a dose or I miss it altogether and then boom you’re shaking all over and asking why you keep doing this to yourself. It just becomes tiring searching for water and popping pills every couple of hours. Seems so effortless to people who don’t have to do it but after 5 years of it 365 days a week it is one of the most prosaic activity in your life.

Yet here I am rejoicing in the miracle of modern medicine and I’m afraid to enjoy it. I’ve been through this before. When I went from waiting for diagnosis to successful treatment and my life and capability improved dramatically, and still to this day the accusations of faking it plague me. People who normally don’t give you the time of day, who just look at you as you scoot past on your mobility device as though you’re the most pathetic thing they’ve ever seen, see you without the mobility device and suddenly WHOA! See I knew she was faking it.

No, you’re not allowed to have a good day. You’re not allowed to have success with treatment. When you do, they expect that you can be like that all the time and when you’re not, well, you’re just not trying hard enough.

People see me and say this is the best they’ve seen me in years. Which feels great. For a moment. Then that moment fades because I know I’m on borrowed time. The treatment is not permanent. Parkinson’s Disease is a progressive and degenerative condition. I will get worse again. The dose will no longer be enough, the type of medication will no longer be effective and I will go back to the hour by hour battle to overcome the wretched disease long enough just to cook a meal, or do a load of washing.

I know what I have to look forward to. It’s not exciting. It’s flipping scary. So why do I not feel like I have the right to enjoy whatever the period of good time it is that I’ve been blessed with, without facing the accusations and assumptions? There’s no way of knowing how long this could last, but some people will expect that while I have this physical capacity I should be “earning my keep” and get a job. Make a “real” contribution to society. I did try that in my first early honeymoon period but the added stress caused me to deteriorate so quickly it was only a few months and I had to quit… and that was only working part time.

I haven’t improved on every level though. Physically I feel the improvement. Cognitively I still struggle. I still do random things like put the kettle in the fridge then wonder an hour later where my cup of tea is that I didn’t actually make. Probably the number one reason why I’m not allowed to drive.

It shouldn’t have to be like this. We shouldn’t have to feel obligated to have symptoms even when we don’t have them. Lets rebel against the expectations of society! Stop explaining ourselves and just respond by asking them how long they’ve been living with {Insert relevant disease/illness/disability here}. Oh, you don’t have it? Great then you can’t really tell me what I should expect to be doing under my circumstances…. Kindly fuck off and have a great day.

In our modern world building so large around us, to many it may seem like all this disability inclusion and access requirements “stuff” is quite new. The slogan for this year’s Disability Action Week is about Inclusion (due to it being the year of the Paralympics the focus is on inclusion in sport mostly). For those, even as new to the game of advocacy as myself, promoting Inclusion of people with disabilities can seem as new as teaching grandma how to use a smartphone. Truth is, we should, as a whole society, be ashamed of the fact that we are still having to be reminded, educated or told, to be inclusive.

It’s 2016 and we are STILL asking for people with disabilities to be included in every day activities in the community that everyone else takes for granted. Things as simple as travelling the footpath to go to the local shop.

Inclusion won’t happen until it starts happening without us having to ask for it. It certainly won’t happen until attitudes change to stop thinking that inclusion is a burden.

The Disability Access to Premises Standards might only be 6 years old but it was a long time coming even back in 2010 and we still have a long way to go in getting it right. The Disability Discrimination Act 1992 is not 24 years old in Australia and STILL, we have cases every day of discrimination against people with disabilities in such common setting.

Just last week a large chain supermarket manager in Fern Tree Gully Victoria was approached by a member of the community about the blocking of the shared space beside a disability parking bay. The manager’s response was that they have always used that space for their fundraising stalls and if the shared space was an issue, he would have it removed.

Photo shows a marquee and tables in the shared space beside a disability parking bay. This space allows people to get their wheelchair or other devices beside the car. The shared space is marked with diagonal yellow lines. It is not a parking space. Under Australian Road Rule legislation it is classed as a painted island.

Not only will the car park no longer comply to the Access to Premises Standards 2010 but he has effectively just told every person with a disability that he doesn’t care if you want to shop at that store, he’s not going to make it possible for you. In fact, he’s intending on doing the opposite. There was no possible way he could have utilised any of the other 90 or so regular parking spaces, it had to be in the disability parking area so hence people with disabilities have to go.

All the great legal minds in the country will tell me (what I already know) that it’s a case of indirect discrimination. There is a legal process in which we can deal with this. It is also long, arduous and can be quite costly. Naturally as you’d expect, Head Office management of this large supermarket chain dealt with the complaint accordingly and the issue has been rectified (so we are told). When there isn’t a higher power at that level to deal with the complaint we’re left with nothing but the legal process and quite frankly I think that’s a bit shit.

To be included we sometimes require alteration, adjustment or addition to something that is existing. In this case, it is access to the building via parking.

For someone with out a mobility impairment, they will just drive on in, hop out of their car and go do their shopping. For the rest of us with disability parking permits who rely on those very well set out spaced marked for disability permit holders so that we may then hop out of the car into our wheeled devices or whatever assistive device we may use and THEN we go do our shopping. For many of use our adjustments don’t stop there but that’s the basic. We asked for an anti discrimination act and finally got it in 1992. We asked for minimum standards for access to premises and finally got it in 2010. Why are we still having to then ask for these things that have already been legislated?

Before my time as a person with a disability, there were many others like me. Some of them still advocating today, some, worn out from the years of repetition are happy to let people like me continue the campaign and I can assure you after only 4 years of this crap it does wear you out.

We get tired of asking you not to park your car on the footpath because gutters are not designed for wheelchairs to travel across. We’re tired of asking you to install eftpos facilities that can be used at wheelchair height. We’re tired of asking for ramps to be placed near the access. Most of all we’re tired of having to ask to be included.

I write this article today with great disappointment. I was promised so many things this year for Disability Action Week by various sectors, agencies and businesses. Nothing happened. It seems that unless I am still there driving it, constantly annoying the people in charge to make sure these things happen, it just doesn’t happen.

Just do a search for Disability Action Week events here in Queensland and I challenge you to find an event or promotion run by the private sector. Find me something that isn’t by people with disabilities, a government agency or non profit organisation so that I can thank them for being considerate enough to act on inclusion without having to be asked or have it driven by us.

If you ever find yourself wondering why someone with a disability is cranky it’s probably because they’re tired. Tired of having to ask to be included in what everyone else just takes for granted. Life.

I knew when I shared the news article with the No Permit No Park crowd it would stir them up. I did it because I wanted to see what solutions people suggested to the issues of safety. Not much was offered other than people need to watch where they’re walking. Which I totally agree with, but there’s a whole lot more to community safety than just personal responsibility.

The issue was raised by a NSW Senator when his wife was bowled over by a large mobility scooter as she stepped out of a shop doorway. She was injured, he was angry and rightly so. The person who hit the woman was travelling far too close to the doorways to be safe. However this wasn’t what the Senator seemed to have issue with. It was the speed. At most on a flat surface it would have been below 12kms per hour depending on the model of the scooter, it’s age and the weight of the person riding on it. The Senator posed the argument that 12kms per hour is too fast and they need to be restricted. He’s right. If we’re talking about scooters being in crowds of pedestrians. What the Senator doesn’t understand is that mobility scooters are designed with adjustable speeds for a number of reasons and should the Senator ever find himself in the situation where he does have a mobility impairment and decides to acquire himself the independence of a mobility scooter then I’m certain he will appreciate this design feature. Until he tries it though he can’t speak for us.

Mobility aides whether powered or not need to meet Australian Standards to be saleable in Australia. The regulation on use however varies from state to state and this is where the biggest problems lie.

Registered Mobility Scooter

In Queensland for example, just like getting a disability parking permit, to have your powered mobility device registered for outdoor use in public areas, you need proof of mobility impairment from your treating physician. If you have a genuine need then you have no issue with this. You only need it once only if your disability is permanent. To legally use a powered mobility device on footpaths or roads in Qld it must be registered. Why? Well, just as disability accessible parking and disability accessible toilets are inviting to people because they’re “convenient”, it was found that mobility scooters in particular were a convenient way to get around without needing a licence to drive. This seemed to be especially appealing to certain members of society who had issues with retaining a driver’s licence, in particular for drink driving. After all how many mobility scooter riders do you ever see pulled over for an RBT? To keep the numbers regulated to the percentage of population with real mobility disabilities it was decided to regulate the use of these devices. Oh, did I mention registration is free? And comes with free CTP insurance?

That’s not to say that the regulation is optimal. As well as mobility scooters, Queensland law also requires powered wheelchairs to be registered for use outdoors also. I’ve had conversations with a number of users over the years and while I personally thought since registration is free and comes with free CTP why the hell would you not register it? However after comparing the differences between the two I completely understand their reasons for not complying with the registration requirement of their powered wheelchair and I totally support them. When you compare mobility scooters and powered wheelchairs there is a significant difference between the two. One is to make life easier and the other is to make life possible. If you ride a mobility scooter but do not use a wheelchair, chances are you can still walk enough to open a door or take yourself to the non accessible toilet and for that you should consider yourself pretty damn well blessed and you should absolutely not group wheelchair users into the same category.

Mobility Scooters are designed generally for outdoor use and have handle bars on a pillar for steering. Powered wheelchairs are designed for both indoor and outdoor use and are steered with one hand using a joystick. Power chairs are very manoeuvrable and easy to use indoors. Mobility scooters are often faced with difficulty manoeuvring in small areas. While modern designs of mobility scooters see them getting smaller and more convenient to use indoors they’re still not the option for those who need continual use of a wheeled device both inside and out. They’re in lesser numbers on our footpaths and even lesser seen on the road, the method of control is significantly different to that of a mobility scooter and just for that reason alone, shouldn’t be included in the requirement to register.

A shop front showing different styles of mobility scooters

Mobility scooters on the other hand need regulation and I doubt it will be long before we see other states following Queensland’s lead.

On the subject of restriction though, well, how much more restricted do you want them to be?

There are size restrictions for using them on public transport. This is why I chose a mobility scooter that is smaller than the size of an average wheelchair. Many shopping centres and other indoor public environments also restrict sizes to ensure the comfort of all patrons. I know when I’m walking (shuffling) around, being surrounded by groups of large mobility scooters makes walking around safely somewhat difficult. I avoid walking around in car parks, so I’m not about to rush into an enclosed space with a bunch of kamikaze scooter riders.

Restricting use to driver’s licence holders though is just outrageously ridiculous. Being unfit to drive because my legs don’t work well enough and my upper limb use is restricted does not mean I am incapable of managing a mobility scooter. Two levers, back and forth make it pretty simple. If you can walk or cycle around the neighbourhood then you can manage a mobility scooter. When you apply for registration of your scooter one of the requirements are that your doctor needs to be of the belief that you’re capable of controlling one. The downside to this is that there is no updating of this once you’ve registered like there is with your licence once your doctor has diagnosed you with any illness that may affect your ability to drive (if they’re a decent doctor). Once you’re registered you’re registered. You just keep renewing it. Although I’d like to believe that if I reach the stage when I don’t have the capacity to realise I’m no longer safe on a scooter my family will be the first to act on it.

Speed restrictions are another question. Should the speed be restricted further than it is already. While most are limited in Australia to a brisk stroll to a jog, or 8 to 10kph some are sold that go up to 12kph. The design of mobility scooters is different do that of a powered wheelchair in that a scooter will pick up speed in excess of what it is powered to do if going down hill (isn’t gravity amazing!), while powered chairs (for the most) do not. The average walking speed is around 5kph. All motorised mobility devices have adjustable speed controls however very few have a monitor that allows you to see how fast you are going. While my CTM scooter is restricted to 8kph I’ve used my mobile phone GPS to detect the speed and hit just over 9kms going downhill. I know right! Speed demon I am. Point is I couldn’t tell how fast I was going. Luckily for me (and the people around me) I’m able to judge what is a safe speed around other people. Although I am known to become frustrated in shopping centres and speed on around people who shop in herds and use up the entire corridor.

The problem with speed restriction on these devices is that the terrain we travel on isn’t always forgiving and the motors being electric have no regulator to adapt for more power required like gears or a turbo booster on motor vehicles. Steep hills, ramps and soft ground such as grass or dirt (there isn’t always a footpath) all affect the optimum power of the device.

There’s no accounting for weight and I am sure that there has to be a difference even if small, in the power used when a person of 110kgs is travelling on the same device as someone of 50kgs. Nonetheless that’s not the main reason these devices are designed with enough power to reach these speeds. Crossing roads is one of our biggest challenges. I am eternally grateful to those who stop on the highway off ramp at North Lakes when I’m trying to cross because cars rarely see me and they just as rarely do the 40km speed limit on that section having just left a 100km stretch of road. When crossing the road is like playing a game of Frogger (you Sega kids from the 80’s will remember that one) you want to know you have a little bit of power behind you.

A mobility scooter is lying on it’s side under the front bumper of a car after being in a collision.

There’s nothing to be gained by the disability community by restricting our inclusion and access any further than it already is. Even though the non disabled might not care all that much about it now, well, there’s every chance they could end up joining us one day. Then they may regret those restrictions they put on their future lives.

Regulation however needs to be carefully managed so as not to over regulate something that doesn’t need to be, just creating more red tape and paperwork and of course, cost to the government. The most important thing about designing regulation is that it should be based on input and feedback from those who will be regulated; the disability community. It doesn’t need to be a 258 page document. Just basic commonsense and benefit for those under the regulation.

Free CTP with the Free registration is a great upside for mobility scooter users but as the incidences for powered wheelchairs are 1 to 100 for mobility scooters the inclusion of them in compulsory registration is just not feasible.

If speeds are going to be limited then all devices should be fitted with a speedometer. This needs to be included in the Australian Standards so that the devices aren’t sold without them or at least an after market accessory is available.

Better access to Occupational Therapists for those seeking to acquire the use of a powered mobility device, for professional advice not just sales advice.

Better access to learning support for those new to the device. It’s great to get a flyer with information but practical demonstration, tricks and tips from those with experience makes learning far easier and gives the user confidence.

Most of all… better damn footpaths. If paths were clear, wide and undamaged then perhaps riders wouldn’t be forced to ride so close to doorways.

If you think mobility scooter riders are a danger you’ve clearly never been to a Boxing Day Sale.

A row of mobility scooter riders one riding behind the other

Epilogue:Australian Road Rules The Australian Road Rules state that a person using a mobility scooter is classed as a pedestrian if the maximum speed on level ground cannot exceed 10 km/h. As such the rider: must observe the same road rules that apply to pedestrians must not obstruct the path of any driver or other road user must not travel along a road if there is a footpath or nature strip adjacent to the road, unless it is impracticable to travel on the footpath or nature strip if travelling along a road must: – keep as far to the side of the road as possible – travel facing the approaching traffic unless it is not practicable to do so can use shared paths, off-road bike paths and shopping malls does not need to have a driver’s licence.

I’ve just completed my #Census2016 with great satisfaction. I’m a community service provider’s dream on the census. I am all the needs for services in an area. They wish there were more of me to quantify their funding desires. I have a disability, I’m of Aboriginal and foreign decent. I’m the child of a refugee. I have a low income. I require assistance due to a permanent disability and health condition. I don’t work but I do volunteer. I rely on public transport. I have children. I am all the needs dependent on the community for assistance. Do I get all that I need? Shit no. I make do with what I have and I’m often pushing shit up hill trying to get anything more than the minimum, but I’m good with that. I’m a fighter these days. Lets face it I have nothing better to do with my time right? Pft

I’ve been following the whole privacy concerns about the Census this year and I still for the life of me can’t see anything different about the last time I did it other than it was online and for the first time I can put no religion as an option for religion.

I’m not worried about putting the information in an online form since now that’s what Centrelink, Child Support, ATO, Medicare and a bunch of other government departments now force me to do and they know way more about me than the Census asked. I can’t lie to any of them since they’re all connected. Centrelink tells the ATO how much money I earn. The ATO tell Centrelink if I tell them about any additional money or if an employer tells them they paid me and I didn’t report it. Child Support tells Centrelink how much money my kid’s father gives me. Centrelink tells Medicare what kind of concession I’m entitled to and Medicare tells my doctor. Medicare tells my kid’s dentist how much money they’ve given them to spend on dental work and the dentist tells medicare how horrid my kid’s teeth are. The ATO even tells me how much interest I earned from my bank accounts. Thanks to this amazing capability I found two bank accounts I had forgotten about. Nothing in my life is a secret.

When it comes to questions that are an invasion of privacy, applying for Disability Support Pension was the most invasive process I’ve ever had to go through. Some might say you don’t get a choice with the Census… well… I didn’t really have a choice about DSP either. It was that or die starving and cold in a park somewhere.

When it comes to the collection of your private information and the sharing of it there’s no guarantee it won’t be shared somewhere. It was harder for me to get my medical records from the hospital than it was for my doctor. Go figure. Whether or not you have a choice is a matter of perspective. I have a choice whether or not I want to have a Facebook account. I had no choice whether I wanted to be treated in a mental health facility. I have a choice if I want Facebook to show my email, date of birth or relationship status. I didn’t have a choice that things about my treatment in a mental health facility were recorded without my consent or knowledge.

We have a choice to sign up for a rewards program that tracks your spending habits. We don’t have a choice about our pay provider tracking our spending habits… oh… wait… that’s only for “welfare bludgers”.

Ok, let me elaborate.

The federal government are very concerned about what people who “receive taxpayers money” are spending it on. See, some people have problems that are considered of an anti social nature. Some of those people, whether it be because of those problems or not, receive welfare benefits from the Department of Human Services, formerly known as Centrelink, formerly known as Social Security. We actually have a social security Act in Australia so that we don’t end up with a (ahem) poverty problem in what is a first world country. Any one who meets the eligibility requirements has the right to apply for welfare assistance in Australia. Some (particularly in government) don’t refer to it as a right though. They call it entitlement and apparently entitlement is a dirty word in 2016. The federal government are so concerned that all the people of antisocial nature are all getting hardworking taxpayer’s money for nothing that they want to restrict it even more than it already is. I don’t know about most people but the $470 odd dollars a fortnight I use to get on Newstart Allowance didn’t exactly get me a full fortnight’s party worth of drugs, alcohol and gambling, let alone keep a roof over my head, run a car and clothe and feed my kid but the federal government are so concerned that I might spend the money of hardworking tax payers on something self indulgent that they are now seeking a method to not only prevent it from happening but also track what I might spend “their” money on.

Okay Okay, let’s ignore the fact that I was prior to acquiring an incurable, progressively debilitating and degenerative disease through no fault of my own other than the stars I stood under, I was a hard working tax payer person. I worked so hard I had two taxpayer jobs for many moons. In fact, just because I had a second job, the great southern land laws meant I would be taxed MORE at that second job just because I chose to work harder. None of that matters when you stop doing it. You’re no longer considered by these people as a contributing member of society anymore and you’re suddenly beneath them. Never mind the fact that these said people are also paid by the taxpayer and when they STOP working for it still get paid by the taxpaying peoples. Now just don’t you worry about that.

Back to the elaboration part… So concerned about what welfare bludging peoples might be spending a taxpaying person’s money on, they are trying to introduce a method of controlling and tracking what we do with the “gift” we are given every fortnight.

It’s marketed as “The Healthy Welfare Card” but there isn’t much very healthy about it. It has been outsourced to a third party to do it (the first step toward privatisation) which is a company by the name of Indue. Indue are a company that provides payment management systems. What they’re doing for our government is providing a payment management system for people on Centrelink. It supposedly works just like a VISA card only you are limited to the amount you can withdraw in cash and you can’t use it at any venue that sells alcohol or gambling products or services. You will no longer use your traditional bank account for your payment to go into. Your payment will only go on this card and this card is your only access to your (their – the taxpayers) money. Of course this invites a whole conversation about the insurmountable amounts of issues this will cause people (oh but they have answers for everything apparently) but that isn’t my most significant concern.

Since we’ve been talking about information privacy, imagine your employer said from now on your pay will only go onto a card that we provide you with and we will track every transaction you use this card for. There’d be uproar. The civil libertarians, the unions, the Privacy and Data Security Commissioner, gosh even Get Up! would be all over that shit. No, you can’t do that to people right? Well that is exactly what Indue are currently doing to people on Centrelink. No, not all of us. Yet.

There are two trial sites. East Kimberly in WA and Ceduna in SA. Both are remote communities that have issues that many remote communities face and differ from more metropolitan communities. One of the biggest issues being lack of access to support services. So naturally the results of the trial are going to translate to every area in Australia right? Cos all of us welfare bludgers are the same.

Again back to focusing on the privacy issue… when you read through Indue’s privacy policy it’s quite frightening. I can’t help but question not only why is it necessary for Indue, a third party that is NOT a government department to have so much information about me but also why it’s necessary for them to share this information with OTHER third parties.

My mother’s maiden name? Seriously dude why don’t you ask me for my Netflix password too? What difference does it make to me being stigmatised by being identified by a one size fits all card, which benefit I get? My own bank didn’t even ask what country I was born in. Or my marital status. And they damn well don’t need my concession card details. What business is it of theirs if I have other bank accounts? I won’t have any freaking money going into them anyway.

Worse still… why is it necessary for Indue to track our transactions? And reading between the lines of the privacy policy suggests they may provide this data collected on me back to Centrelink (I’m guessing for a fee, also paid for with money from the taxpaying peoples). Why is it necessary for Indue OR Centrelink to know when and where I get my hair cut and how much it costs? Why do they need to know I had a donut with my coffee today? Do they really need to know about that Adult Shop purchase that was a gag gift for a friend? (Hey that’s the story I’m sticking with). They already know how much medication I take and where I buy it! Why do they want to know about my multivitamins?

Most of all… why does Indue get to profit from welfare? (Interest earned from money stored in bank accounts – cos lets face it if the national welfare bill is $240M per year then that’s some nice freaking interest earned even on a standard savings account). AND – if this is a service that at the end of the day MUST be privatised…. why was this never put out to tender? (Unless I totally missed that story, and if so, I want details.)

You think the Census was an invasion of your privacy? Please. Just pray you don’t end up on this card as a welfare recipient. They’ll know where you are, when you’re there and how much it cost you. Them. Oh, you know what I mean.

It’s been a while since I’ve written. It happens from time to time. It’s either because I’m so busy, or too sick or I just haven’t had anything stir my passion enough that justified writing here. It’s been a bit of all of that of late but the past week has really stirred me.

When I was a kid I didn’t know that we were different to other families. I didn’t know there were different classes of people and that you were treated accordingly. I just treated everyone the same. I was the kind of kid who brought all the strays home. I was the kid who cried when we saw a dead animal on the side of the road. All I ever wanted was to be happy and to be included.

I was excluded from very early on though. My father left when I was very young and we had a step father. I wanted so much to be accepted I would forgive his crimes and abuse. Every time we were referred to as the step children or my mother’s children in that family I would feel myself hanging onto a rope trying to climb my way up. He only ever taught me exclusion. He was a racist bastard, always belittling us for the clothes we wore or the friends we chose or the music we listened to. He would call it n*gger music. I hate that word. I hated him.

I wasn’t the cool kid in school. I was a lot of things but not cool. I think I experienced almost every kind of exclusion there is throughout my life. Social exclusion, racial exclusion, even in my life as it is today, disability exclusion. I wanted a different life for my children and the last thing I wanted was for them to be anything like the people who excluded me in my lifetime just because of who I was, the colour of my skin, the country my parents were born in or that I use wheels instead of legs sometimes. I want my boys to grow up into the kind of men who will be great community leaders and embrace the differences in their community.

So when my child is excluded I teach him to stand up for his rights. I do that by standing up for him. Even when it means I will be shunned by the community I am fighting for him to be included in.

There have been a few occasions in different environments but none that stunned me more than the sporting club we’d been members of for over a year. He’s 11. He’s got his father’s genes and he is a bigger kid. I don’t want him to be fighting the same chronic illnesses his father is that can be prevented by managing his weight. So as well as trying to manage his diet and teach him good food habits (a battle and a half when his father teaches him bad habits), I wanted to ensure he has regular exercise. In the summer we swim. In the winter we tended to hibernate, so I went looking for a sport that would suit him.

Mr11 has already experienced exclusion on a social level mostly because of his learning disabilities and behaviour disorders, but no one knows more than I do how hard he works at trying to “fit in” and how much it hurts him that he doesn’t. He’s a great kid. Very compassionate and so witty. He has his struggles though and I was worried about finding a sport that would be understanding to his needs.

I was introduced to a club in the Queensland Christian Soccer Association. I liked their values and thought it would fit well with his needs but most of all they promoted inclusion of kids with disabilities. So it seemed, since he had voiced an interest in soccer, this was worth a try. For the first year it was brilliant. He had his moments of struggle but it seemed that the coach and the team really tried to ensure all the kids felt included. It had a very inclusive feel about it and he loved going to training every week and playing games. They were a strong team. Went through the whole season undefeated. For the first time in his life he felt like he was good at something. He knew he wasn’t the strongest member of the team. Many of the other kids had been playing for several years but he enjoyed it and he was active. The following year something changed and I know he doesn’t cope well with change, but he seemed to be handling it. The team had been boosted from a division three level to a division one. The competition was much more difficult. For the first time he experienced loss and even though other team parents feel differently than myself, I was glad to see them lose. It broke down the cockiness they had developed from not losing. Mr 11 needed to experience being a good loser as well as being a good winner. He did pretty well.

About half way through the season, he came home from training one night, visibly upset saying he hated soccer and he was never going back again. When he calmed I managed to find out that another team member had said to him, “You’re not even a good player I don’t know why you’re on the team.” He no longer felt included. Instead he felt blamed. He saw this as meaning it was his fault they lost.

It took me a good four days to convince him he was not to blame. They played as a team, they won as a team and they lost as a team. It was no one person’s fault if they lost and certainly in no way was it any one person’s doing alone if they won. That he had strengths and weaknesses just like any other member of the team. I convinced him to play that weekend but he did so begrudgingly. I could see his heart wasn’t in it. Until they won and he was singled out by the coach for playing well. I had hoped this was proof enough to him that the other kid was wrong.

Even when they didn’t win I hoped that he enjoyed himself on the field. That he saw it as fun as much as competition. After all it was one of the key values the club and the association promoted and we all know if kids don’t enjoy it, they won’t exercise. Many of the clubs had struggled to maintain a steady membership. So what happened next was so shocking to me I had no choice but to speak up.

We had made our way to an away game. A field with no toilets, no food, no coffee and the weather turned. On arrival it began to rain. We sat there in the cold wet only to have our child along with three other subs benched for the whole game. This had never happened before. I was so disappointed for him. For them all. I could see how disappointed they were that they didn’t get a play. Most of all I was disappointed with the coach’s reasoning. He wanted to put a scoring team on the field and his language suggested that to win this was required and if this was required it “might be the way it has to be.” So effectively he was telling those four kids they weren’t good enough to play on the team.

I am not a religious person. I followed the club’s code of conduct and values out of respect. I didn’t feel that respect was mutual. The club’s values were not being shown to these kids. So I complained. My complaint was met with a that’s the way it is response, so being the kind of person that I am, I took the complaint further with club management.

I was reassured that this wasn’t the kind of practice they supported and that it would be resolved. I have to say I was really pleased with the club’s response and handling of the issue. They needed to handle it and be aware of it because if this kind of behaviour infiltrated the club it would destroy the very values and ethics the association was based on. Most of all it would drive members away. Many of us were there because other competitions and sports were too competitive for our kids’ needs. It wasn’t a selection based on skill kind of competition. It was to get more kids involved in sport.

The coach was not happy with my complaint, nor that the club reinforced this practice was against their values and wouldn’t be allowed. The next thing that happened, I can’t guarantee was accidental, but nonetheless I can’t help thinking it was fate. We received an SMS that was about us and not intended for us.

I was referred to as a “bleeding heart parent” with a “cotton wool kid”.

I was disappointed. Shocked. Most of all, I was angry. It couldn’t have been further from the truth. If I was really wrapping my kid in cotton wool then I wouldn’t have pushed him to play sport in the first place. I’d let him lay in bed playing Xbox all day. I wouldn’t be trying to protect him from losing by telling him it’s okay to be a cheerleader on the bench. I wanted my child to feel what it’s like to lose in competition. We can’t always win. We can’t always be the best at everything. Most of all, as a team, we have to support each other’s weaknesses and build on them. No, my kid was the one with the bruises and grazes. My kid has no idea what cotton wool is. He’s also the kid who has a parent who stands up for him and teaches him to stand up for himself. To stand up for what’s right.

I’m kind of fed up with this bleeding heart bullshit. If I stand up for disability rights I’m a bleeding heart. If I care about what happens to others I’m a bleeding heart. If I do whatever is in my power to stop injustice from happening I’m a bleeding heart. If I stand up for human rights I’m a bleeding heart. Until those rights are yours and then you want me on your side.

I’m pleased to say Mr11 is back to playing. He might only be a sub (when everyone else decides to turn up of course, when they don’t then he’s good enough to play the whole game), but he plays. He gets on that field when he’s sick, when he’s scared and when he’s indifferent. He faces his challenges and faces his fears. No cotton wool required. I’m so damn proud of that kid. Most of all, I can sleep at night knowing he’s proud of me. Because even though I feared I would be ostracised by the parent clique of win or die sideline parents (and some have made it pretty clear that’s how it is), I still stood up for him and what was right.